Organizing person-centred care in pediatric diabetes - communication, decision making, ethics and health
Short description
Type 1 Diabetes is the second most common chronic diseases in children in Sweden with an incidence around 50/100 000. The treatment results are in general unique good why the risk for future complications has decreased significantly. However, this were not the case for children of minority groups.
This project aimed to change this situation by:
1. Deep pilot interviews with adolescents with diabetes;
2. Analyses of video-taped outpatient clinic visits;
3. Education of diabetes team members in PCC;
4. Creating a specialized, outpatient diabetes clinic in an suburb of Gothenburg with many immigrant inhabitants and offer the families with a teenaged child a person- and family centered care.
Conclusion: After two years the immigrant adolescents attending the specialized PCC clinic showed as good metabolic control as the Swedish-born group.
Short description of main results
By offering a PCC-specialized, outpatient diabetes clinic for immigrant adolescents with T1D a significant improvement, well in-line with the Swedish-born group, within two years could be shown. Their risk for vascular complications was therefor reduced.
The integration of the diabetes diagnosis was developed by shared decision, e.g. when the adolescents felt they were acknowledged in their feelings, hope, fear and autonomy and when the caregivers showed adequate interest (1-3).
Ethical challenges in implementing PCC in adolescents were mapped out and a new design of PCC in this age group was described:
”Counselling, Self-care, Adherence Approach” –a more longstanding support to strengthen the selfesteem and the diabetes self care but also as a model for care of other groups of chronic diseases relaying on selfcare in young people (4-6).
Publications
1.Boman A, Bohlin M, Eklöf M, Forsander G, Torner M. Conceptions of diabetes and diabetes care in young people with minority backgrounds. Qual Health Res. 2015;25(1):5-15.
2.Boman Å, Bohlin M, Eklöf M, Forsander G, Munthe C, Törner M 2017. Health Care to Empower Self-care in Adolescents with Type 1 Diabetes Mellitus, and An Immigrant Minority Background. Sage Open Medicine, 5: 1-8. DOI: 10.1177/2050312117700056
3. Hartvigsson T, Munthe C, Forsander G 2018. Error Trawling and Fringe Decision Competence: Ethical Hazards in Monitoring and Addressing Patient Decision Capacity in Clinical Practice. Clinical Ethics, 13 (3): 126-136.
4. Herlitz A, Munthe C, Törner M, Forsander, G 2016. The Counselling, Self-care, Adherence Approach to Person-centred Care and Shared Decision-making: moral psychology, executive autonomy and ethics in multi-dimensional care decisions. Health Communication, 31 (8): 964-973.
5. Munthe C, Sandman L & Cutas D 2012. Person Centered Care and Shared Decision Making: Implications for Ethics, Public Health and Research. Health Care Analysis, 20 (3): 231-24.
6. Sandman L, Granger BB, Ekman I, Munthe C 2012. Adherence, Shared Decision-Making and Patient Autonomy. Medicine, Health Care and Philosophy, 15 (2): 115-127.
Conference presentations within the GPCC project
7. Hartvigsson, T, Munthe, C (2013). Respecting the Adolescent Diabetes Patient as an Autonomous Person -What Does it Imply?, ISPAD 2013: 39th annual conference of the International Society for Pediatric and Adolescent Diabetes, Gothenburg 2013.
8. Herlitz, A, Munthe, C (2013). The Moral Psychology of Person Centred Adolescent Diabetes Care: two potentially conflicting ethical dimensions of shared decision making for sustainable self-care. ISPAD 2013: 39th annual conference of the International Society for Pediatric and Adolescent Diabetes, Gothenburg 2013.
9. M Törner, M Bohlin, Å Boman M Eklöf, C Munthe, C Ottesjö, H Wigert, E Wikström , G Forsander. Organizing Person-Centred Care in Pediatric Diabetes: Communication, Decision Making, Ethics and Health. ISPAD 2013: 39th annual conference of the International Society for Pediatric and Adolescent Diabetes, Gothenburg 2013.
10. Törner M, Munthe C, Wikström, Forsander G et al (2013). Improving diabetes care for minority group adolescents - a stance in perceptions, attitudes, communication and context. ISPAD 2013: 39th annual conference of the International Society for Pediatric and Adolescent Diabetes, Gothenburg 2013.
Researchers
Gun Forsander, Associate Prof , Institute of Clinical Sciences, University of Gothenburg
Christian Munthe, Professor, Dept of Philosophy, Linguistics and Theory of Science, University of Gothenburg
Marianne Törner, Professor, The Institute for Occupational and Environmental Health, University of Gothenburg
Staffan Larsson, Professor, Dept of Philosophy, Linguistics and Theory of Science, University of Gothenburg
Ewa Wikström, Professor, The School of Business, Economics and Law University of Gothenburg
Mats Eklöf, University lecturer, Institute of Psychology, University of Gothenburg
Ann-Katrine Karlsson, RN, The Queen Silvia Children´s hospital, Sahlgrenska University Hospital, Gothenburg
Åse Boman, Head of Department, University Lecturer, University West
Margareta Bohlin, Associate Prof Institute of Psychology, University of Gothenburg
Cajsa Ottesjö, Dept of Philosophy, Linguistics and Theory of Science, University of Gothenburg
Helena Wigert, University Lecturer, Institute of Nursing Sciences , University of Gothenburg